Well so much for taking all the precautions, yesterday when I was killing time in the pc lab waiting for my class to start I ended up having another grandmal seizure(i haven't had one since i was 15)& the hospital did bloodwork & a ct of my head. Both came back normal so they gave me Adivan and sent me home. I had to come to school today because we didn't think it wise that I stay home by myself. I slept like 10 hours and Im still tired and still somewhat foggy. My rheumy is now finally deciding we should proceed with the mri & spinal tap tests due to the seizure. It sucks what we have to go through sometimes for our drs to listen! :/ She doesnt understand why the er sent me home especially only after getting a ct scan of the head & bloodwork which was normal. I did have a low grade fever of 99.3 before i left the hospital too. I have been getting them recently due to the lupus. I am very sensitive to the sun & fluorescent lights so im wondering if the lights caused the seizure?? Anyone have any input on any of this?

01-20-2010, 09:09 AM

BonusMom

So sorry that you're going through all of this, but glad that your rheumy is following through. Good luck to you and keep us posted.

01-20-2010, 09:20 AM

laurid8967

Hey there -
Well I have recently started having "seizures" (they are in proces of seeing if it IS a seizure or something else). I could be wrong, but I think that your doc needs to refer you to a neurologist, who is a specialist in seizures/neuro problems. Having a Grand Mal seizure is a BIG DEAL and not very common at all. Most seizures are either Petit Mal, Complex Partial, etc. Grand Mal means losing conciousness - which is a big deal and needs to be addressed asap. They CAN be quite dangerous. The first test any doctor shoud have done in ER or referral from your rheumy is an EEG. I am certain about this. An EEG is a specific test for seizure activity. But - no point in looking back - you DEF need to see a neurologist - period. Just as you would not go to a neurologist for your joint pain, you shouldnt see a rheuny for a neurological issue. Many of us with lupus have different docs on board that treat the many aspects of our lupus: nephrologists for our kidney problems, pulmonologists for lung issues, cardiologists for heart, and neurologist for any central nervous system involvement.
I recently began having possible complex partial seizures again (had them back in 2005-07) and went to my reg doc first who, as I was sitting there, ordered an EEG at the hospital. Her next call was to the neurologist who she wanted me seen by right away.
Incidentally, a spinal tap has no relevence on seizure activity, but is tool to look for CNS infection or as a secondary test for MS. An MRI - I dont believe - also will not show any seizure activity, but can indicate inflammation or a vasculitis type situation. The MAIN test for seizures is an EEG, and - in my humble opinion lol - needs to be done ASAP. THere is no messing around with seizures, ESP any seizure whereby you lose conciousness. Why the ER didnt do that FIRST is a mystery to me. I suffered with seizures for a few years and ALWAYS the first test is the EEG.
On a happier note - there is a TON of anti-seizure meds out there! This condition is COMPLETELY managable. You may have to try a couple to see which works best, but you will definately not have to suffer once you find the right med.
Please keep us posted - your rheumie has no business trying to manage this issue. He is not trained in this field - he must refer you ok?
Good luck and prayers coming your way,
Lauri

01-20-2010, 08:51 PM

mountaindreamer

hi mommyof1,

so sorry to hear about the seizure, it sounds like lauri gave you some great advice. Now you have the information that you need to make sure that you receive the attention that this situation requires. Just want you to know that i am thinking of you, and hope that you are feeling better.

01-21-2010, 10:27 AM

Mommyof1

ehhh :(

Thank you for the support. I am actually still very foggy from the seizure. I haven't felt this way before and im not sure if it is normal or not. The first day of school was when I had the seizure and Im also going to miss 3 days next week due to testing. Im seeing my local neuro monday, getting an mri/mra & another test monday morning & an eeg tuesday. Its like you try to get ahead but Lupus says no....im so upset :(

01-23-2010, 09:24 AM

laurid8967

Good luck with all your tests and please keep us posted! If youre still feeling foggy, I hope you listen to your body and stay safe and rested.
Prayers and warm thoughts coming your way...
Lauri